AP, Just treating inflammation not the Auto Immune side?

[Joe M]

Hey TBird,

Do you think AP is made stronger by spreading misinformation about other treatments?

[tbird2340]

[user=20]Joe M[/user] wrote:

Hey TBird,

Do you think AP is made stronger by spreading misinformation about other treatments?

Joe, I'm not going to get into anything.. I just posted what I felt. I'm not coming here looking for info on other treatments because I'm not going that route..

[Joe M]

[user=851]tbird2340[/user] wrote:

I'm not coming here looking for info on other treatments because I'm not going that route..

Exactly my point.

[tbird2340]

[user=20]Joe M[/user] wrote:

[user=851]tbird2340[/user] wrote:

I'm not coming here looking for info on other treatments because I'm not going that route..

Exactly my point.

I'm afraid I don't get your point then..

[Joe M]

Just that I wish the discussion here would focus on AP and not on tearing down other treatments, especially with misstatements and exaggerations.

[Tiff]

I'm going to pop in here and lend a bit of support to Joe.  I like having him around.  He provides what I consider appropriate balance to discussions.  I have never seen him disparage AP, only gently counter extreme attacks on conventional meds.  I don't always agree with him, but he is a voice of calm and reason that encourages us to think critically about all sides.

It is true that people come here for AP information.  If we believe that is the primary focus of this board, then we should discourage talk about supplements and diets because those are not technically part of AP as per Dr. Brown's theories either.  I rarely see anyone complain about that.

People come here to get well.  Let's talk about all our options.  If a post doesn't speak to you personally, then let it go and move on.  Joe's wife may have to revisit AP some day.  It would be good for him to have kept up with what it going on here.  I may have to give up the typical AP approach and add traditional meds someday.  I like knowing I can ask Joe questions about them.

[stwig]

Joe,
Statistics are tricky things, they can be bent and skewed in many directions. What you may consider an exaggeration, others may consider the truth, their truth.
I read a heart breaking story of a woman on Enbrel for 2 years for treatment of MILD RA in here hands. She had total relief of her RA symptoms during that time. Then she got colon cancer. Now off the Enbrel she has SEVERE RA is in every joint of her body. The only thing that gives her relief is morphine.

That womans story, along with my understanding of what the tnf blockers do was enough to tell me to stay away from that drug.

I understand you want to support and justify your wife's decision to use biologics. Here are the “facts” that were told to me by my previous rheumatologist when she wanted me to start on Enbrel. I would have a 38% increased chance of getting colon cancer or lymphoma. I would have a 50% increased chance of getting TB. I would NEVER be able to go off of the Enbrel, as patients that go off have worse symptoms than ever before.

My RA does not allow me to run literally, but mentally I ran out of her office and have not gone back.

Just my 2 cents worth.
Starla

[Joe M]

[user=75]stwig[/user] wrote:

Joe,
I read a heart breaking story of a woman on Enbrel…

I can't dispute something you read on the internet.

The majority of rheumatologists would be surprised to hear the claims made by your previous rheumatologist regarding biologics, especially when compared to the results of existing clinical and research studies. 

You are so right that statistics are tricky things.  There are some truths though, like correlation does not equal causation.  The best we can do is look at all the existing data and go from there. 

[Trudi]

[user=45]Tiff[/user] wrote:

I'm going to pop in here and lend a bit of support to Joe.  I like having him around.  He provides what I consider appropriate balance to discussions.  I have never seen him disparage AP, only gently counter extreme attacks on conventional meds.  I don't always agree with him, but he is a voice of calm and reason that encourages us to think critically about all sides.

It is true that people come here for AP information.  If we believe that is the primary focus of this board, then we should discourage talk about supplements and diets because those are not technically part of AP as per Dr. Brown's theories either.  I rarely see anyone complain about that.

People come here to get well.  Let's talk about all our options.  If a post doesn't speak to you personally, then let it go and move on.  Joe's wife may have to revisit AP some day.  It would be good for him to have kept up with what it going on here.  I may have to give up the typical AP approach and add traditional meds someday.  I like knowing I can ask Joe questions about them.

Tiff–

I wasn't able to respond earlier because of an appointment.  I'm so glad you posted in the meantime–saves me the time as I am in total agreement with your assessment.

Trudi

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=1137]Noel[/user] wrote:

AP treatment is about the safest form of treatment there is and it is the only treatment that even attempts to take out a possible cause, as opposed to suppressing the immune system, which doesn?t sit right with me.

For me it?s a no brainer, because at the end of the day you can still fall back on convention.

Noel, back to your original comments, I'd just like to second what you said above. You're right, AP is the safest treatment available for rheumatic disease today and Road Back will endeavor to continue to exist until such time as a cure for all time is found and in order to advocate for those who do choose AP.

Thank you for joining us here on the support forum and just want you to know that your comments are appreciated.

A very warm welcome to you and hope you will continue to join in the discussion!

Peace, Maz

[Starr]

When you censure or belittle others on the board who are making an effort to provide solid relevant information (Joe), you become exactly like the presumably closed-minded rheumatologists that you denounce (only with much less knowledge of the extremely complex intricacies of immune system function).  If this board is intended to follow in the spirit of Dr. Brown, I would expect patient wellness to be a primary concern.  It's wonderful to have a forum where people can openly exchange info about their experiences with AP but a mindless, cult-like fervor is a disservice to all.  I am in my 5th year of AP for an aggressive case of RA.  I'm doing extremely well on AP and recommend it to others but I still have the occasional flare, have sustained some permanent damage, and don't expect to be “cured” by antibiotics.  Based largely on my success, a friend embarked on AP a couple years ago….she posted here frequently.  She was very committed to AP but her RF was rising by the thousands monthly.  Even our highly regarded AP doc (RK) said, whoa, you have to do something else or you're gonna go poof (GP-speak for serious complications).  She went on Humira for several months, which stopped the RA freight train and probably saved her.  She's now on an extremely complex assortment of antibiotics, herbs, supplements, etc, and is still trying to sort out what are her major triggers and what's really helping.

If anyone is interested, I will post some information about current medical opinion and research regarding the role of autoantibodies in the etiology of autoimmune diseases and autoimmune disease in general.  I think it's pretty well accepted by most rheumatologists that there is some kind of environmental (often infectious) trigger for these diseases.  It's what happens next that's the challenge.

For Lynnie, who wanted documentation about methotrexate:
Side effects do occur in some people taking methotrexate. At the low weekly doses used to treat rheumatoid arthritis, however, serious side effects are rare.  More serious side effects, like your mother's, are probably caused by long-term use of steroids.
http://www.orthop.washington.edu/uw/medications/tabID__3376/ItemID__77/PageID__62/Articles/Default.aspx

There are side effects to all of these drugs, even minocycline, which has been shown to be an extremely powerful anti-inflammatory and immune modulator (both stimulates and suppresses parts of the immune system).  A significant possible side effect is minocycline-induced autoimmunity.  The main symptoms of minocycline-induced autoimmunity are rash, polyarthralgia, hepatitis, and pulmonary manifestations.

I appreciate the wisdom of Tiff's post.  We all want to get well.  We need to be open to all our options.

Wishing the best for all,
Starr

[maz.aust]

[user=27]Maz[/user] wrote:

[user=1137]Noel[/user] wrote:

AP treatment is about the safest form of treatment there is and it is the only treatment that even attempts to take out a possible cause, as opposed to suppressing the immune system, which doesn?t sit right with me.

For me it?s a no brainer, because at the end of the day you can still fall back on convention.

Noel, back to your original comments, I'd just like to second what you said above. You're right, AP is the safest treatment available for rheumatic disease today and Road Back will endeavor to continue to exist until such time as a cure for all time is found and in order to advocate for those who do choose AP.

Thank you for joining us here on the support forum and just want you to know that your comments are appreciated.

A very warm welcome to you and hope you will continue to join in the discussion!

Peace, Maz

MAZ,
hear hear !!  ….

NOEL,
Good to see you partake in this conversation, I have no doubt that you will gain knowledge in the future.  You already know I agree with your opinions.

JOE,
I for one appreciate anyone playing the Devil's Advocate, however let's try hard not to upset someone in the process.

If you are new and just starting AP, want to find out about AP or even if you are further down the track and decide for whatever reason to give AP a try – good luck to you,,,,, this website, is in my opinion, the best place to get lots of information not only about AI diseases themselves but AP Therapy which can, by example of others, give you hope for remission.  

It is a well known fact that 'self-help groups' achieve the best results — there it nothing like being able to talk to someone who has been there and done that.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Parisa]

Joe,

I have always appreciated that at the Roadback site there were no ugly drag down fights like I've seen in other forums.  I had also noted your fairly anti-AP stance but in keeping with the tone of this site let it pass.  When Lynnie finally decided to take you to task, I hoped you would respect what she had to say because we have enough ugliness with these dreadful diseases and need to come here for support.

The majority of people who come here have questioning minds no doubt about it.  However many did put up with years of misinformation and poor treatment with the conventional treatments you espouse.  If we wanted to read about the “wonders” of biologics and chemotherapy drugs, there are many places for us to turn to.  Please respect our wish to dedicate this site to the antibiotic treatment of autoimmune conditions. 

[lynnie_sydney]

Wow, I sure stirred some things up with my post! I posted it because I didnt think it was fair to take to task someone who had literally just joined the Board – at my invitation, incidentally – for making a perfectly reasonable statement that is completely in line with the mission of this Foundation.

AP treatment is about the safest form of treatment there is and it is the only treatment that even attempts to take out a possible cause, as opposed to suppressing the immune system, which doesn?t sit right with me.

For me it?s a no brainer, because at the end of the day you can still fall back on convention.

This Board is absolutely open to a range of views. However, when views are posted, the Foundation asks that everyone substantiate their statements whether it be conventional wisdom, AP wisdom or supplement wisdom – and this time Joe didnt. 

And the Board's primary (not its only, but its primary) focus is for AP support and education/information. That is why it exists. This support is never more needed than by newbies who are often confused and unsure of themselves and their decision to try AP. I just didnt think it was fair to shoot Noel down within hours of him arriving at a Board that ostensibly is there to support him. Having said that, I get the feeling that Noel can well take care of himself in that regard;). Sorry that you received such a “dynamic” welcome Noel. I hope you stay around. You will find alot of support and lots of helpful information here. Lynnie 

[/quote]

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[lynnie_sydney]

Starr wrote

When you censure or belittle others on the board who are making an effort to provide solid relevant information. no one belittled Joe. But, in this instance, Joe did not provide solid, relevant or substantiated information. He just shot Noel down. As I said in my post, I respect Joe's generally balanced points of view.

but a mindless, cult-like fervor is a disservice to all. This is the least cult-like and open-minded group of people I've ever had the pleasure of dealing with.  

With regard to use of biologics (or other meds), no one is saying not to use them. Many people arrive here using other forms of treatment which most  hope, eventually if possible, to come off. My own (also highly regarded) AP Doc also states that conventional medication always has to be factored in as a possibility if the disease runs rampant. I dont think anyone here would dispute that.

Side effects do occur in some people taking methotrexate. At the low weekly doses used to treat rheumatoid arthritis, however, serious side effects are rare.  More serious side effects, like your mother's, are probably caused by long-term use of steroids. My Mother's crumbling bones are absolutely likely to be from long-term steroid use. However, her throaty voice and persistent cough, susceptibility to infection, high blood pressure and thinning hair are more likely (and documented) side effects of long-term methotrexate use.

I think it's pretty well accepted by most rheumatologists that there is some kind of environmental (often infectious) trigger for these diseases. I've only heard one rheumatologist say this in 21 years. And in the 5 years I've been on this Board, the story that is most frequently cited by people posting here is that their rheumatologists say the opposite (an idiopathic disease, immune system attacking itself for no identifiable reason etc). 

  I would love it if you could provide some documentation for that. As far as I am aware, minocycline is considered by the ACR as a mild DMARD, a weak immuno-modulator[/color] that should only be used in mild to moderate RA. That is the story most people tend to get from rheumies (and only those who have heard about minocycline as a DMARD). If there is research to support its 'extremely powerful inflammatory and immune modulating' properties, that would be a very powerful new weapon for lots of people to present to their doctors as a good case for its prescription. And I'm sure alot of people here would very much appreciate you posting it. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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